Cian O'Callaghan: State 'Waiting for Parents to Die'

Go raibh maith agat. Tánaiste, there is a brutal truth at the heart of our disability system. Families have been forced to say it out loud because the government is not listening. The reality is the state is waiting for parents to die. Parents in their 70s, 80s and even in their 90s must continue to act as full-time carers for their son or daughter with an intellectual disability, regardless of their age, their health or their ability to care for another adult. If they are still alive, the state looks the other way. Tánaiste, the system for housing adults with intellectual disabilities is both nonsensical and unusually cruel. When a parent passes away, only then will an emergency placement be found for their son or daughter. And that placement is too often hundreds of miles away from their home. Within the space of a few weeks, a vulnerable person will lose their parent, their carer, their home, their friends, their community and any semblance of life that they once knew. No civilised society should treat its citizens like this. Tánaiste, there are more than 600 adults with intellectual disabilities in residential placements outside of their home county. Almost 200 are over 100 kilometres away from their home. There are people from Cork in Kildare, people from Waterford up in Dublin, people from Kildare in Tipperary. Hundreds of vulnerable people are being ripped from their community at the most difficult time of their life. Tánaiste, Minister Foley recently announced that local authorities will be required to set disability housing targets, but people cannot live in targets and families cannot wait to see if these homes will ever actually materialise. Tánaiste, the state's growing reliance on private operators is a symptom of a deeper dysfunction. The Murriosa Foundation, a progressive Section 38 provider, recently told the Oireachtas Committee on Disability Matters that it is forced to rely on the private rental market. This means it invests tens of thousands of euro to meet HICWA standards, only to face eviction if a landlord decides to sell. At the same time, commercial companies funded by your government can buy up properties far from a resident's home and community. This privatisation of care is of serious concern for parents. They do not want their son or daughter outsourced for profit. They want them to be housed and cared for in their community. Tánaiste, adults with intellectual disabilities deserve to live with dignity, security and independence. Targets alone are not enough. The Before We Die campaign wants a disability housing plan that includes delivery timelines, clear reporting and multi-annual and ring-fenced funding. Tánaiste, will you finally listen to these parents? Will you meet them? They've asked to meet with you and you haven't arranged to meet with them yet. And will you introduce the ring-fenced funding that is so clearly needed to provide homes for adults with intellectual disabilities? Tánaiste. Thanks very much Deputy O'Connor and welcome again to your colleague WNS. Good to see him settling in well beside you. Thank you for raising this very important issue. And yes, I will commit, I think I've been in touch to arrange to meet them, but I will be meeting them. I'll be meeting them in the month of June. I know the Taoiseach has also met them. I know Minister Foley and Minister Higgins has met them. When I say them, I mean the Before We Die group and I want to thank them for the work and the advocacy and shining a spotlight in relation to this situation. Sometimes you just have to stand up in this house and admit where we are isn't where we need to be and this is one of those cases. So I have a load of figures here and I can tell you that we're going to do more residential placements this year and we are by the way. I can tell you that we've increased the disability budget and we have. None of it takes away from the point that you've made, which is valid, which is accurate and which is the lived experience of far too many people in this country. And we did have a very good meeting of the Cabinet Committee on, I think it's the Cabinet Committee on Disability with a focus specifically on housing, a couple of weeks ago. This was motivated by the campaign of the Before We Die group and at that meeting a number of things were agreed. I want to thank and acknowledge the role Minister Brown and Minister Foley and Minister Higgins are going to play together in relation to this because we need everybody to pull together in relation to this and there was basically a number of principles set that we need to have a shift away from this crisis response to a planned approach to commissioning specialist residential places because you're right there's far too many emergency situations that had we as a state planned earlier and better would have not needed to arise. But secondly we need a rebalancing towards more placements with non-profit providers and social housing and away from privately funded housing. I mean your point is right and if it's a criticism it's right. We are using quite a lot of private for-profit providers and it's better to use them than not have any option available but the direction of travel here is to ensure that the local authorities as the housing authorities in communities are stepping up to disability housing or housing for a person with a disability in the same way that they would be around broader social housing. But also I do think we can be doing more and should be doing more in supporting the non-profit providers to build homes. This used to happen in Ireland. I can think of it in my own community where there's a small housing estate of a relatively small number of homes, specialist staff in place and it works. So the points you're making are valid. We will need a plan. I take the point about targets don't house people but at the same time we do need to have I think targets. You're saying there needs to be a degree of specificity around them in terms of both funding and timelines. Fair point. And I'm very happy to, let's concur to whatever the best way to do this, whether it's at an Oireachtas committee, whether it's in this house, to genuinely have a level of debate and discussion on how we get this right because this group are putting it up to us as a country to do better and we simply have to. Go raibh maith agat. I welcome that you are being frank about how appalling the situation is and you're acknowledging that it has to change and it's not acceptable. If the government is serious about not-for-profit providers being able to play a better role here you must provide ring-fenced multi-annual funding so they can plan for services. Give you one example, St Michael's House, before your government, your party took office, in 2008 it had five respite homes. It now has just one. There's a six-year waiting list for adults with intellectual disabilities to access respite. So parents are getting older, getting exhausted, they can't even access respite for their loved one. That's an appalling situation. Are you going to fix that? Are you going to address that? There is no need for this situation to be happening. The HSE is aware of the needs of the adults with intellectual disabilities for years. They don't need to be waiting for a crisis situation to occur. This could be fixed, needs to be fixed, but for that targets are one thing. We need clear timelines, we need the ring-fenced multi-annual funding. Will you commit to that and when are you going to give us information about that? Yeah, look, firstly I'm going to commit to meeting the group in the month of June. I'm very happy to come back and engage further with W Callan on this after that. We are increasing, and I think this is an interesting area where extra funding is 100% required, but also monitoring the impact of the extra funding in terms of the systems we have in place also matters too. For example, we're increasing respite funding by €25 million this year. We're increasing the amount of funding for home support and personal assistance hours this year as well. I can say that that's true, but then there's the demographic issue as well and the planning issue and how that money is deployed, and if it's deployed in an emergency capacity it ends up having less impact because it costs more than it does in a planned capacity, which I think at a high level is the point that the group is making. So yes, we need a housing plan when it comes to people with disabilities. Yes, that will need to have targets and specific timelines, and of course the government will need to fund it. But I do want to have a better shared understanding of what that direction of travel looks like, because not every person with a disability, no one is suggesting they are, is the same. For somebody it might be an ability to continue to live in the community, continue to live in the family home. For some person it might be a specialist residential service. For some person it might be a local authority housing. For some person that might not work at all. So I think to have a plan that tries to address that breadth is also important, and I think we should facilitate detailed engagement in this House on that.